Re: Update on Josie

[Guest guest]

>My Family sends love, light. and most of all strength to you both and

precious Josie...May the light of the Creator encompass you all with

grace..

You are all in my prayers Namaste Debra

>

> My Granddaughters progress,

> Thank you all

> Wednesday, December 19, 2007

> What’s to come!!!

> Josie has been doing really well at home. I've been weaning her

drugs & she

> is handling it fine, no withdrawals, thank God. She had her first

doctors

> appointment last week with her primary pediatrician. It went really

well, she

> didn't fuss, she's gained weight since being discharged & threw up

on the

> doctor after she stuck the wooden stick in her mouth! LOL

>

> Her next appointment was to be with Surgery follow up last week but I

> canceled it b/c of the bad weather we had here. They gave me a

resheduled date of

> January 8th! I was ok with that until recently. Josie has been

throwing up

> less throughout the night & day but when she does throw up, the

nasal

> feeding tube comes up with it. That means we have to put it back in

through her

> nose & check placement (in the stomach) everytime. Its not

pleasent at all.

> She hates it, we hate doing it but it has to get done. Its

physically &

> emotionally exhausting on all of us. There is not a single time

that or I

> do it & don't break down crying afterwards. She's getting stronger

& more

> forceful. She'll throw her head back, scream like you wouldn't

believe and

> lock her body like a board! Not to mention the other day, on the

3rd attempt

> to get it back in, I made her turn blue. I knew that wasn't good

so I removed

> it immediatly. That was a sign that it went into the lung & not the

> stomach. That was it, I had it! She fell asleep right away & I

put her to bed

> without the tube in & waited until got home from work to do.

I was so

> shaken up, it was horrible. I told the home nurse about it & one

of the

> neonatologists called yesterday to ask my permission to use Josie's

picture in a

> presentation they do every month on babies on ECMO. They wanted to

do it on

> Josie since she has been such a miracle & beat all the odds. Of

course I gave

> my ok & then told the doctor what was going on with the tube. She

said it

> was expected to happen. See, originally, when Josie left the

hospital we knew

> that eventually she would need to have another surgery to put a GT

(stomach

> tube) in & repair her hiatal hernia which is causing the acid reflux &

> vomiting. What we didn't know was when. The surgery team wanted

to wait & see if

> the vomiting increased they would do it sooner but the longer the

better.

> They want to wait for her diaphram to heal from the 1st surgery &

her abdomine

> to heal also from the 2nd surgery. Well, now that she is throwing

up the

> tube more often something needs to be done now!

> I called the surgery clinic & asked to get Josie in sooner than

Jan. 8th but

> with the holidays the surgeon isn't going to be in the office. So, I

> begged the nurse practioner to get the word to Dr. Sharp, he's

amazed by Josie's

> recovery and I knew that if he heard she needed to be seen he would

make an

> exception. Well, I was right. Josie's name got to him so he spoke

to the

> surgeon that was to see her & asked if he could take over her

follow up! I got a

> call today saying that he wants to see her tomorrow!!! I'm so

happy, I

> just knew he would come through! I saw the look in his eye the day

before Josie

> was to go home, he didn't say anything but look at her, face, not her

> incision or belly...he just wanted to look at her face! Then

before leaving her

> bedside he put his hand on my shoulder & said she's a miracle &

walked off! So

> I knew that he would be the one to come through for Josie!

> So tomorrow she has to see the surgeon. We will discuss the

procedure &

> what will happen. I'm pretty sure he wants to repair the hiatal

hernia & put

> the GT tube in at the same time. What does this mean for Josie???

Well, to my

> understanding, putting in the GT tube is a 10 min. procedure. The

surgery

> for the hernia repair, will be a couple of days. Josie will need

to be

> hospitalized again. Its not fair but with everything we're going

through now with

> this damn tube, I pray that its worth it! I don't know when or what

time

> frame we're looking at for sure. I'll know more tomorrow.

> Josie also has an appointment after that with the special care

clinic who

> will go over what surgery's plan is & talk more about nutrion,

developmental

> stuff, ect. So we'll have a very busy day out!!! We also are

expected to

> visit all the nurses & doctors in the NICU! They love & miss her

so much

> already! Josie has touched all of them there. Its wonderful!

> Oh...the home nurse came today & to make things a little more

urgent, Josie

> has lost 3 oz. Now that doesn't seem like a lot but 3 oz. in one

week is

> quite a bit to lose. The home nurse even called surgery & the

pediatrician to

> let them know that this needs to be done asap. The vomiting &

removing &

> replacing this feeding tube as much as we are having to,can cause

more damage to

> Jo's esophagus & sinus'.

> It sucks! I wish I could take it all away from her! I would have

a long

> long time ago!

> More updates to come after our appointment tomorrow!

> Thanks to everyone that wants to help us out & has helped out this

> holiday!!!! All of you will hold a special place in our hearts

forever!

> I will pay it forward one day!

> ~Tara

>

> Love and Light

> Annette

>

>

>

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